I have been doing a great deal of research into the kinds of losses that families experience when a loved one has a diagnosis of a mental illness. This is such an un-talked about phenomenon that is deeply experienced by the caregivers and the families that it is astounding to me. I have uncovered what feels like a wealth of information from allied fields, like dementias, war, disasters, etc that it saddens me that so little is brought forth for something that affects so many.
Blandon (2016) has written a series of 3 articles that describe “dementia grief.” The series summarizes much of what I have found in both the research and my own lived experience. For example, she mentions “Disenfranchised grief refers to grief that is not publicly acknowledged and sanctioned. This can occur in a variety of situations in which there is significant loss of some sort but not the opportunity to talk about it openly because of stigma or lack of understanding and sympathy from others. Disenfranchised grief can occur in the parents of adult children with mental illness, criminality, alcoholism, or other substance abuse.” Makes sense considering that when a loved one has these descriptions to capture their experiences, there is little acknowledgement or recognition of the loss involved. Losses of their beloved as a partner, friend, child, with all of the roles and components of relationships that were once fulfilled.
She goes on with the working definition of ambiguous loss: “Ambiguous loss refers to a significant loss that is lacking in clarity, finality, and does not have a normal sense of closure.” “There are two types of ambiguous loss. In the first, the individual is physically absent but remains psychologically present. This has been described as “Leaving without saying goodbye”. Examples include prisoners of war or disaster victims who are missing. “In the second type of ambiguous loss, the individual remains physically present, but is psychologically absent – this is described as, “The goodbye without leaving”. This type of ambiguous loss occurs in a variety of conditions, It is very difficult to grieve someone who may no longer be psychologically present as a spouse, a parent, a companion or other intimate, but who remains very much a physical presence with ever-increasing needs for care that must be met. The very ambiguity of the relationship makes it challenging for the family member to acknowledge the loss, to grieve, and move forward. Ambiguous loss – a loss that resists resolution and complicates the grieving process – is the result.”
Three strategies are offered: join with others with shared experience (like support groups, this closed group, etc); create a grief ritual; and, mindfulness.
So, with this in mind, we developed a “How To” seminar which explores this in greater depth and offers caregivers and families the space, tools, and strategies to “move forward” through the losses. In addition, the closed FaceBook discussion group (Grow a Strong Family Inc. Together) is a venue for support, acknowledgment, and encouragement. Of course, coaching can really get into this with a customized menu of services and strategies.
The full article series can be found here: https://www.dementia.org/dementia-grief-characteristics